‘I feel incredibly lucky to be here 12 years on from my diagnosis’ – Natalie’s ovarian cancer story

In May 2012, I celebrated my 40th birthday. I was healthy and well. But by the autumn, I started to experience bloating. It seemed to come and go. I noticed that my skirts were beginning to feel a bit tight, but it was when I started to lose my appetite that I really started to worry.

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In the October half-term, we went away on holiday and I felt that something was definitely wrong. I Googled my symptoms and ovarian cancer was one of the things that came up, but my husband, who was a medical professional, reassured me and I convinced myself that I was too young for that.

However, on returning from holiday, my husband and I decided I should go and see the GP. I knew that my symptoms were vague, but I was also convinced that something wasn’t right. The doctor was dismissive, suggesting that I probably had IBS and should make changes to my diet. He reluctantly referred me for a scan.

By now I was in a bit of a panic. My gut feeling was that there was something seriously wrong. Instead of waiting for the scan, I went privately to see a bowel specialist who sent me for an ultrasound. This showed tumours on my ovaries, so I was sent for a CT scan and MRI and referred to a gynaecological oncologist. He suspected ovarian cancer and sent me for biopsies for confirmation.

'The shock of hearing I had cancer was enormous'

I had tried to convince myself that I was fine and that it would just prove to be a harmless cyst, so the shock of hearing I had stage 3c ovarian cancer was enormous. I felt like I had been shot. I was told that I had a large mass on both ovaries, and it had spread outside the ovaries. I knew very little about ovarian cancer or how serious it was, but I was nevertheless terrified. My children were 10 and 12 at the time, and I couldn’t bear to think about how long I might have left, or whether I would see them grow up.

I couldn’t understand how, as a 40-year-old, slim, healthy non-smoker, with no family history of the disease, I could receive a diagnosis like this. It was devastating. At that point, the consultant could not give me any idea of my prognosis, but I was referred for immediate treatment.

I remember going for my first appointment with my incredible consultant at St James’s University Hospital in Leeds, feeling like a terrified little girl. But he looked at me with such support, reassurance and empathy, that I immediately felt at ease. He told me that he would do his best to get me back to the healthy and fit person I had been six months before. There were obviously no guarantees, but these were the words I needed to hear. They gave me hope. It was only years later that I realised that my chances of surviving beyond five years after diagnosis were actually pretty slim. But I never wanted to acknowledge this at the time. I was determined to cope and to focus on getting through this difficult journey.

I had three rounds of chemotherapy to which I responded well – by the end of it, there was no evidence of disease. This was followed by surgery. I underwent a full hysterectomy which brought on early menopause. This was tough. My consultant then suggested I took part in a clinical trial for the last three lots of chemo. This involved having some of the drugs administered directly via a port into my abdomen. Despite a few days when I felt like a zombie, I tolerated this well. I lost my hair but had an amazing wig, which really boosted my confidence.

'I discovered I had the BRCA1 mutation'

We tried to shelter the children as much as possible, and it certainly helped to know that the treatment was working. By the time it finished in April 2013, I was cancer free. I was able to start getting my life back, but finishing the treatment brought mixed emotions.

I was relieved I’d reached the end of it, but it was scary to think about what I had been through and I was constantly fearful of the cancer coming back. I had blood tests every three months, then every six months and then annually. Each time, there was an anxious wait for results. Five years after my initial diagnosis, I was signed off.

Shortly after my treatment ended, it was suggested that I have genetic screening. My brother had previously been diagnosed with melanoma and, following my diagnosis, we both tested positive for the BRCA1 mutation. In some ways, it was a relief to discover that I carried the mutation – it provided some sort of explanation as to why I had received an ovarian cancer diagnosis at such a young age, and also why I had responded so well to treatment.

‘I was able to take preventative action’

Of course, it also brought with it additional worries. I was now aware that I had a massively inflated risk of developing breast cancer. So, in October 2014, I had a preventative double mastectomy and reconstruction surgery. Knowing that I carry the BRCA1 gene mutation has allowed me to do everything I can to avoid cancer in future. I did not want to sit around and wait for breast cancer to strike, so I was able to take preventative action.

I have since discovered that my mum (who was recently diagnosed with breast cancer at the age of 75), my sister and my 24-year-old daughter also carry the BRCA1 gene. I also have cousins who have been tested. Having taken preventative action, there will hopefully be members of my family who now won’t get cancer and have to go through what I did. Having an Ashkenazi Jewish background contributed to my risk, as 1 in 40 Ashkenazi Jews have the faulty BRCA1 or BRCA2 gene, as opposed to 1 in 400 in the general population.

Knowing that my children could carry the gene was an enormous weight on my shoulders. But my daughter has managed to see the positive side of having that knowledge. She will not have to face a surprise cancer diagnosis as I did. And while there is pressure on her to have children sooner rather than later, she will have the option of choosing to have preventative surgery, as other members of our family have done.

‘Cancer research is so important’

Marking 10 years since my diagnosis was a massive turning point for me. That was the point I realised that my risk of getting cancer was almost as low as anyone else. Despite feeling incredibly fortunate to have survived everything, it was years before I could cope with an ache or pain without getting into a panic and automatically thinking my cancer had returned. I have now done everything I can to prevent it and am aware of how fortunate I have been. I feel so incredibly lucky to still be here. I know there is such a high reoccurrence rate with ovarian cancer and have sadly seen so many other women face relapse after relapse.

Image: Natalie on holiday her with family

I get so excited when I read of new treatments and developments in the fight against ovarian cancer. I would love more than anything to one day see a discovery that will prevent this disease altogether. I realise that this is only possible with continued cancer research. It breaks my heart when I see how cancer destroys families, and I know that I am only here thanks to developments in treatment and research into the disease. New targeted treatments and the idea of a preventative vaccine in future give me hope. Cancer research is so important. I wouldn’t be here without it.

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